At a time when public health policy affects the daily lives of nearly all Americans, accurate, secure and insightful data are more important than ever. Experts who gathered online for the inaugural Finger Lakes Health Data Conference earlier this month say the 14-county region continues to lead the nation in many respects, while also grappling with new challenges from rapidly changing technologies and skyrocketing data volumes.
“The better we make use of the health data generated every minute, the better our lives and communities can be,” said Jill Eisenstein, president and CEO of the Rochester RHIO, which organized the conference. “While the Greater Finger Lakes Region has been one of the country’s pioneers in health information exchange and data sharing, we have an obligation to keep learning and innovating in areas such as race and ethnicity accuracy, information access, trend reporting and new applications. This conference shed light on the power and potential of health data.”
More than 100 public health officials, researchers, business leaders and others from across the region joined the half-day event.
It opened with a keynote address from Joshua R. Vest, PhD, MPH, associate professor of Health Policy & Management and director of the Center for Health Policy at Indiana University. An internationally-known health services researcher, Dr. Vest discussed how the ever-expanding spectrum of health data can lead to better patient care, public policy, research and development, and services management. He emphasized that quality matters, including the accurate recording of non-clinical data such as race and ethnicity, saying “no amount of magic or secret sauce” will fix faulty inputs.
A panel focused on understanding race and ethnicity in health data was moderated by Wade Norwood, CEO of Common Ground Health. Panelists included Marielena Velez de Brown, MD, MPH, deputy commissioner for Monroe County Public Health; Shaquana Divers, MHA, executive program manager for Excellus BCBS; and Jose Canario, MD, chief medical officer for Finger Lakes Community Health. Case examples demonstrated how relevant data collection can reveal upstream social determinants and lead to better outcomes, whether addressed by community or clinical resources.
Deven McGraw, JD, MPH, co-founder and chief regulatory officer for digital records aggregator Citizen partnered with Amy S. Warner, Esq., MBA, general counsel and privacy and compliance officer for Rochester RHIO to review recent federal decisions that allow easier patient access to their digital health information next year.
Two RocHealthData.org program leads showed how the initiative makes big data simpler and more accessible. Kathleen Holt, Ph.D, staff scientist with the University of Rochester Clinical & Translational Science and Center for Community Health & Prevention spoke with Jamie Kleinsorge, MS, senior project coordinator for the Center for Applied Research and Engagement Systems at the University of Missouri. They illustrated how the free website allows anyone to discover and analyze regional health outcomes and social determinants of health through customizable maps and reports.
In closing the day, Eisenstein noted that for a community that has historically focused on data-centric decisions, regional leaders need to ensure inputs are accurate. “We need to focus our energies not only in how it’s documented, but also how it’s collected—for instance, in a way that expresses how someone wants their ethnicity recorded. I think we’re going to be talking a lot more about this going forward.”
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